User perspectives of transitional care for adolescents with juvenile idiopathic arthritis

Objectives. To gain insight into the transitional needs of adolescents with juvenile idiopathic arthritis (JIA) and to examine how these needs may be addressed within a structured programme of transitional care. Methods. A qualitative study using focused group discussions was performed. Groups comprised (i) adolescents with JIA aged 12–18 yr, (ii) young adults with JIA aged 19–30 yr, (iii) parents of adolescents with JIA, and (iv) parents of young adults with JIA. Results. Transitional needs included aspects of participants’ physical, social, psychological and vocational lives. Participants (n = 55) called for developmentally appropriate care based upon shared decision-making, continuity of health professionals, and wider access to information and community services. Suggestions for improved care included individualized assessment of patient's holistic needs and increased transfer preparation. Conclusions. These results provide a useful guide to transitional care and suggest an approach that is adolescent-focused and evidence-based.